Cleft 101- What We've Learned About Having a Baby with a Cleft Lip and Palate ⋆ Kilee Nickels

Our fifth little boy Rush was born with a cleft palate and a cleft lip. It was a big shock to us as we have four other healthy boys and never expected the fifth to have any special needs or differences. We’ve learned a lot since we found out about his cleft. We’ve learned a lot about ourselves, managing life’s expectations, and then also how to care for and what to expect for a child with a cleft. As we go through our journey I want share what we learn and our experiences so that we can help to normalize differences and also to help other parents in our same situation. Today I’ve got a lot to share from Rush’s birth up through his first six weeks of life. I’m calling this post Cleft 101 because I’m trying to share in the simplest of terms, everything I have learned about having a baby with a cleft lip and a cleft palate.

The hard part about a birth defect like a cleft, and maybe all birth defects, is that although you might have a little bit of information from an ultrasound- you don’t have all of the information. Ultrasounds are not super detailed or every 100% accurate, so while we knew that Rush would have a cleft lip and palate, we didn’t know much more. We didn’t know the size of it or exactly how far it extended into his nose or how it would effect him. We didn’t know any of that until he arrived. After we learned that our baby had a cleft at our 18 week ultrasound we had many more follow up ultrasounds. The specialists told us what they could see and offered to set us up with a consultation before birth with our cleft team. They really could only offer us general information and so I opted to wait until after the baby was born to get started with our new doctors and team. I was induced at 38 weeks and you can read his birth story here, As soon as he was born we saw how big his cleft was and it was bigger than I anticipated. We saw his cleft palate and it was kinda scary to see to. I wasn’t sure what to expect, but it was definitely different than a normal baby mouth. The best part though was that it was so easy to look past his cleft almost right away. We were able to see this sweet tiny baby who was ours. And his cleft wasn’t scary. He was still cute and warm and smelled good and felt so good to hold. He was missing some facial tissue, but he was still 100% perfect.

After he was born the nurses gave him to me skin to skin and within about 30 minutes they suggested we let him try to nurse. He definitely still has all of the same reflexes as a normal baby and he was rooting around. I worked with him to try and latch and he actually did pretty well for himself. He was able to somewhat latch on and I had a little hope that maybe breastfeeding would be a partial feeding option. We discussed it being a possibility for a few weeks- but ultimately it wasn’t. The specialists told me they really wanted us to focus on Rush learning to use the bottle because breastfeeding would never be able to fully support him and the bottle would.We brought our Dr. Brown’s bottles to the hospital to try and we also tried the Haberman bottles that the hospital offered. The Dr. Brown’s bottles ended up being our favorite. I started pumping the first day and pumped every three or so hours to try and get my milk to start coming in. Until then the hospital was able to offer Rush formula. However that wasn’t our first choice and my sweet friend happened to have a ton of frozen breast milk in her freezer. She offered it to us and brought some up to us at the hospital. Rush was able to learn to eat from a bottle using her milk and that was a huge blessing. My milk did start slowly coming in and so we fed him that too.

The hardest part of teaching Rush to eat from a bottle was learning how to hold him and the bottle so that it was easiest for him to eat. His cleft made it hard for him to suck so the best thing we found was to fill in the cleft with the bottle nipple as much as possible. I also held him away from my chest in front of me and held the bottle more like a pencil so I could maneuver it easier. It also seemed to really help if my fingers that were holding the bottle were as close to his face and touching his face as much as possible as I held the bottle. The skin to skin of my fingers to his cheeks was helpful to him. The lactation specialist and my nurses were a great resource and by the time we went home he was doing so much better at taking a bottle.

We made an appointment to meet with our cleft team when Rush was about four days old. While we were there we met our surgeon, orthodontist, lactation specialist, nutrition specialist and social services. They were all very helpful. We learned how much Rush should be eating and that everyone’s main concern was seeing him gain weight. They also mapped out a plan for us. Here is the general plan they laid out for us at the time. Things can obviously change and aren’t exactly the same for all babies or doctors, but this is a good basic idea of the plan.GENERAL CLEFT LIP & PALATE SCHEDULE4 days- Start lip taping 23 hours a day.2 weeks- Come back and meet with our orthodontist to make a mold for a NAM. 3 weeks- Come back to be fitted for the NAM and go home wearing it. 5 weeks- Add nasal stint to NAM.10 weeks of weekly 90 minute appointments to have the NAM adjusted.3 months- Possible lip adhesion surgery.6 months- Full cleft lip repair surgery.1 year- Full cleft repair surgery.5 years old- Possible cosmetic surgery to minimize lip scar before starting school.7-9 years old- Bone graft/gum line repair surgery.18 years old- Nose job surgery, jaw surgery (all optional cosmetic plastic surgery).
So what is all of that you ask? It’s all new to us, but we’re learning and I’m hoping to continue to share what we can about our plan and schedule. Like the plan says, we started lip taping immediately. Lip taping is basically just using a long piece of special tape across his cleft to start helping it to close up little by little as he grows. It also keeps it from widening at all as he starts to use his mouth more and more. We taped him for about two weeks before we were set up with the next step in the process, the NAM.

Rush’s NAM.

The NAM is a Nasoalveolar Molding that basically functions as a retainer and a fake palate. It fits in the top of Rush’s mouth and works to close his clefts as he grows. It shrinks the cleft by helping it to grow together over time. Weekly appointments to change how it fits are what continue to help the cleft close. The NAM is also important because of the nasal stint that gets added to it. Rush doesn’t have bone to hold up his nasal cartilage on his left nostril and so his nose is flat on that side. The cartilage in babies is super malleable and by fitting a round stint in his nose it will start to form in a rounded shape to make his nose symmetrical. All of these things make the surgeries that he will have later on easier to do and have a better looking and functioning outcome. We left our first appointment with the team and our life basically functioned like that of any newborn for the first few weeks. Pumping and bottle feeding were a new challenge that I have never had to maintain, but we did it. Then something unexpected happened. I saw a tooth in Rush’s mouth. He had a tooth erupt and it was so odd. I saw it on a Friday and by Monday it was really sticking out. I called our cleft team of doctors and they were not surprised, but they did want to pull the tooth before we were fitted for our NAM mold. I took Rush in for an appointment with the surgeon and thankfully it was a pretty easy process to pull it. It was super loose and tiny and Rush only cried for a few minutes. Because the cleft is in the mouth teeth are always a wild card for babies. A natal tooth is not uncommon and it’s just an extra. It doesn’t take the place of a baby tooth. Also when baby and adult teeth do start coming in cleft kids may have extra or missing teeth. You never know until they get to that age. So we let Rush’s mouth heal up and then had our appointment for the NAM mold. It was about a 20 minute appointment and they just took an impression of his mouth like they do for dentures or retainers. It was no fun for Rush, but it didn’t take long.

A week later we went back to be fitted and that was a more difficult appointment. Rush did not love the process, but it wasn’t necessarily painful or anything. The doctor fitted his NAM and then made adjustments to it during the visit after she saw it in his mouth. The hardest part was holding him down so that we could get it in and then tape it in. The taping is about a 6 step process every time. But once we got the NAM fitted and taped in and got him settled he seemed to be doing just fine. The first few days with the NAM were pretty hard because they were hard days for Rush. He was happy and behaved pretty normal during the day, but by the evening it was almost as if the underlying stress of having the NAM in his mouth was just too much. He fussed and cried from about 6-10 pm every night. We were instructed to take the NAM out daily and wash it, clean his mouth and lips and then check for sores. After the first fitting we did find the NAM was rubbing so we called his doctor and were told to leave it out until we could get back in to have it adjusted. Thankfully since then we haven’t had any more rubbing issues. And Rush doesn’t seem to mind it anymore. He stopped fussing about wearing it after about two days of it no longer rubbing.

Feeding with the NAM was a little bit of a new thing, but Rush picked it up pretty quickly. He actually can’t eat without it now! We still use a bottle and the fake palate even helps him eat. We also have to be careful with how we hold him because of the part that sticks out of his mouth. It reminds me of a sucker stick sticking out of his mouth. We have to hold him so that he doesn’t bang it because it hurts us and him. I’m looking forward to him having more neck control for that very reason.

One great discovery was finding that Rush can use and likes a binkie. We have to hold it in for him, but we really likes using it to sooth in combination with wearing the NAM. Having a soother for him has been such a relief!

Other than all of our doctor appointments and changing his tape every day, Rush is pretty much like any other baby. He keeps us up at night, sleeps all day, poops, pees, loves to be held and is starting to smile. We’ve kept him home a lot during his first six weeks in an effort to keep him healthy, but as Spring is starting we’ll be taking him out more. I know we’ll have stares and comments and questions from strangers about his face. I don’t even see his tape anymore, but if I were to see it as a stranger it looks pretty scary. So far my plan is to be as open about it in public as I have been here. I think I’ll be telling all kinds of folks about our sweet baby and his cleft. Hopefully it will help to continue to normalize differences as we share our story. It hasn’t been easy, but it hasn’t been impossible and we can do hard things. Thank you for all of your support and prayers and help. It definitely feels like we aren’t alone in our journey when we have so many friends all over the world backing us!